Thursday, February 9, 2012

Sarah Palin, allow me to adjust your special needs attitude

By now you may have read Sarah Palin's essay for Newsweek, Life With Trig: On Raising A Special-Needs Child. She's talked before about her feelings on having her son, who has Down syndrome, in her 2009 memoir Going Rogue: An American Life. This time, she got into particulars of bringing up Trig. Putting aside our political differences, I appreciated it when she noted that families of kids with special needs are "bonded by a shared experience of the joys, challenges, fears and blessings of raising these beautiful children whom we see as perfect in this imperfect world." That's so true.

Still, she didn't need to mention the fears/challenges of raising a kid with special needs nine times. In general, I thought her attitude toward kids with special needs could use some adjusting. And so, in the spirit of that special needs connection we share, I thought I'd offer up a few footnotes to snippets from her essay. Because, you know, she regularly reads this blog.

Sarah said...

"Yes, raising a child with special needs is a unique challenge, and there's still fear about my son Trig's future because of health and social challenges; and certainly some days are much more difficult than if I had a 'normal' child."1

"He may not be the next Wayne Gretzky,2 but our hearts are filled with so much pride watching Trig giggle with his sister's puppies or...."

"My family knows that Trig will face struggles few of us will ever have to endure, including people who can be so cruel to those not deemed 'perfect' by society. The cruelty is more than made up for3, though, when someone simply smiles at our son. Nothing makes me prouder.45

1 Please, quit thinking about Trig as "not normal." It does him no good to compare him to other kids, or to compare him to anyone. He is his own normal. Try to appreciate your son for what he can do, for what he does do, and for who he is. Be his cheerleader.

2 Every kid with special needs has his own unique abilities for doing well in this world. Think of Trig's success in terms of his capabilities, not Wayne Gretzky's. Realize, too, that he's very young with so much potential, and you don't yet know what he's capable of. Rethink your idea of success, just like you had to do following a certain presidential race.

3 Sorry but, perhaps you've inhaled too much hairspray? N-O-T-H-I-N-G makes up for people's cruelty toward kids with special needs. Cruelty comes from ignorance and stupidity. You can't cure stupid, but you can make clueless people more aware that kids with special needs are kids like any other kids—and that they are not an entirely different species.

4 I'm wondering if your press person slipped in this line and you didn't notice, because I have a hard time believing that you're more proud of people's smiles at Trig than you are of Trig himself. Forget what people think. The only validation you need of Trig's awesomeness is Trig himself, who has surely overcome many challenges in his four years of life and who has surely been making progress. Look to Trig and take pride in him.

5 I've seen the way strangers smile at my kid and others with special needs, and often they are not "Isn't he cute!" smiles. More typically, they are "Oh, that poor thing, isn't he cute!" smiles laced with pity. Sometimes, people have even said "Poor thing!" Teach the world not to feel bad for your child. That's one of the greatest gifts you can give him—and all of our kids with special needs.

6 Props, Todd! Special needs dads don't get enough credit for all they do. Perhaps, though, you could have a little chat with your wife about that whole "not normal" thing?

Yes! Thank you for addressing. I particularly found the OTHER people smiling rather odd.

And (re above) since I don't know anyone who actually believes only special parents get special kids, I don't offer my support blindly. You get an essay in Newsweek & time on Fox, it would be nice if you spent some time thinking about what you're putting out there.

As a mom of two special needs kids, I appreciate your perspective, as you've stated some good points. However, I think the tone is a little mean spirited and clearly your political views taint your objectivity. I understand disagreeing with her way of thought, but the whole "hairspray" thing was a little snarky. I think it's possible to debate without attacking the person.

Granted, hairspray was cheap potshot and you're right, hard to write completely objectively. But I would have written basically the same thing if, say, Hillary Clinton was in Palin's position. I'm so disappointed that Palin's column didn't do more to show just how amazing our kids are (one of the key reasons I write this blog). Palin's in the extremely rare position of being a very public figure with a kid who has special needs, and so in my mind she is highly accountable for her words. She has the power to change perceptions about kids with special needs. Sadly, she didn't this time around. Barbara: re, hidden agenda? Nope. I'll just refer you to my post with props for Rick Santorum.

Ms. Palin is the master of platitudes and this article is little more than that. As Cheryl D said, it has been rumored that Palin leaves Trig's care to others most of the time. I would love to see some photos of her down on the floor doing his OT and PT home exercises with him, or taking him to a park, or anything like that, because I literally cannot visualize her doing anything with him than holding him on a stage. It seems to me that if she were involved, she would have written more about his personality and the things she likes to do with him...it would have had a more personal touch.

I've been frustrated with her public attitude toward her son's disability since the People magazine article came out when she was running for VP. Obviously we all react to our children's diagnoses in different ways, but it rubbed me the wrong way that she said (if I am remembering correctly) that she was so ashamed or embarrassed of his diagnosis that she didn't tell her husband for a bit and just flat out chose not to tell her other children. Willow figured it out at the hospital and asked her mom if Trig had Downs syndrome. Then Sarah had to explain why she hadn't told them. There are a lot of emotions I can understand, but I have a hard time wrapping my head around not telling my other kids for months because of feeling ashamed.

It sounds like perhaps her attitude hasn't changed all that much and she is still feeling (at least publicly) insecure with Trig's diagnosis. I hope she can get the support she needs to see his full potential as opposed to focusing on the negatives, because as awful as cruelty from others is, the bigger tragedy would be going through life seeing your child with a disability as "less than." Hopefully this interview is not an accurate portrayal of how she presents her son.

i am the last person to be sympathetic of sarah palin. card-carrying democrat here.

but hey, let's give her a break. yes, she has a huge responsibility being a public figure and all, but she's human. just because she's in the public eye doesn't mean it's any easier for her to come to terms with her son's diagnosis and his day-to-day care. it's taken me 4 years to really come to grips with my own son's diagnosis of CP, and i'm sure i still have lots of growing to do.

we really don't know how involved she is with any of her kids; so it's mean to insinuate that she isn't that involved with Tripp. it's none of our business anyway.

and even if it's true that she hid his diagnosis for awhile--again, she's human! this was likely the first time she ever had to face the possibility. it can be a scary, overwhelming one. people deal with things differently. so let's extend the same understanding to her that we wish others would extend to us.

Having a child with special needs is not easy, it is not something that anyone does perfectly. We all have our own way of dealing with our specific circumstances. It is a process. Most parents are not fully prepared for what it takes or know what their own reactions will be.

It has taken me some time to come to the place where I see my daughter's accomplishments before I see her shortcomings.

I think that perhaps Sarah has some adjustments to make and perhaps she isn't yet a good spokeswoman for parents of children with special needs.

I believe that having a child with special needs is a journey. I think Palin is expressing where she is on her journey and how she feels about things at this time. Right or Wrong, Good or Bad. My 6 year old son, Caleb, has Spina Bifida and I can honestly say that my view of him now and his abilities are vastly different than when he was younger. I've learned on this journey and my views have changed over the years and I'm certain they will continue to evolve. It's a process. We need to extend some grace to others on the journey.

I know I am being hard on her. Yes, we all have our own timelines for growing into our roles as special needs parents. But the difference is, again, Sarah Palin as a super-public figure. She's inherently a spokesperson for us all in this "On Raising A Special-Needs Child" essay. And she's perpetuated negative ideas about kids with special needs. And that is disturbing, given the attention this article is getting.

Love your post and perspective! I am a sister of a downs brother and I HATE everyone saying poor you or what would it have been like to have a "normal" brother --he is Normal, just his own version and I would not have it any other way.

Ellen, I liked what you had to say. Whether it is a person in the political role or someone down the street something needs to be said. I too am disappointed with what she said.Far too often we as a society allow society to deem what is "Normal". I do not feel that it was mean spirited or that your political differences were tainting your opinion or view. I agree with the reader who wrote that “perhaps she was trying to express her desire of being open and accepting”. When my husband and I were given our son's diagnosis we were told we would mourn... like normal. For the longest time I felt like I was wrong because I didn't mourn. I am a mom with four children yes they all have "Special Needs". I battle ignorant people daily and that is what bothers me the most; that ignorance is still here and people still judge and label people. I have learned over the years that society does not define my normal, my children's normal, and they sure as heck do not define Trig's Normal! I do not devout to a political party to the point where I will back them up even in such a heated moment like this. I am not sorry for my opinion I am not sorry for speaking my voice. I do not have regrets for my children and their diagnosis; I do not have regret with the therapy I had to learn from specialists to give my child (vision therapy exercises, exercises given by PT and OT needed but not covered by insurance just to name a few). I do not have regrets of the battles I have had to take on with schools; I do not regret the pride I have in my children. Ellen I felt the same disappointment when I read Palin’s article. Like I said earlier I agree with you completely.

I like yourself can over think things. You clearly did that here. I have said similar things as Palin did. My daughter is a special needs 3 year old. Daily it's a roller coaster of emotions. We have good moments and bad moments; good days and bad days. Until we're currently in the moment we don't know how good are bad it's going to be. We don't know how others will respond to our child. But I can careless what others think of my child or myself for that matter. Opinions are like belly buttons. Everyone has them and they all stink. Your opinion regarding Palin's article is just that... STINKY!

I liked your "adjustments" to Ms Palin's quotes! Since I am German I do not have any political view on her, for me she is just a famous person who has a child with special needs. From my point of view I can absolutely comprehend what you critise her for. Of course, accepting your child with special needs is a journey, but a public person like Ms Palin who could advocate for children with special needs so much better than most of us due to her media presence could do better.

When someone running for the 2nd highest office in the US promises families with loved ones with disabilities that they will have "an advocate in the White House," it seems that they would have taken on the role of advocate in a more visible and outspoken way since then. Pointing out that Trig is not "normal" and won't ever be the next Wayne Gretzky isn't helpful. Being such a visible public figure should give her the power to advocate on a grand scale and to help change public perceptions rather than reinforce stereotypes.

As parents of special needs children, we do not always express our feelings in the same way, or with the same words. I don't feel the need to pick apart her article, and personally, I find that it was well written and full of love for her son.

I know the intent of the blog post was apolitical. But since Sarah Palin is a political figure, I have a hard time not taking anything she says as automatically political.

Someone above said: "You think she'd take some time to think about what she was going to write." Well, I'm sure she did think about it. Or at least she okayed what was drafted. I feel obligated to believe that she actually believes it's not normal / acceptable to live with a disability.

Which once again, gives away her worldview steeped in hate.

It's a mistake to be disappointed in this woman. She can't be a good advocate for anyone. Unless they like guns A LOT.

I don't think criticizing other parents for how they delt with a childs diagnosis is cool at all. Everyone takes things differently and I for one am always relieved when I read that someone else was actually disappointed like I was! I love my son to death but that doesn't mean that everyday I don't wish things were going to be easy and yes, normal for him...or that he could be a star running back one day, or a nuclear physicist! It's ok for me to grieve the things he won't ever be, like Wayne Gretzky...that doesn't mean I won't be crazy proud for everything he DOES accomplish though. I don't know, I guess I just think acknowledging that my son with, Down Syndrome, is actually not ”normal” is not a bad thing. It doesn't make me not appreciate all that is by acknowledging all that he isn't...

I think her article showed she loves her son and she is handling his challenges the best any of us can. Picking apart other families struggling and judging their every word isn't helpful to any of us and just makes you seem like you think you are a superior special needs mommy...public platform or not...

This is not what I would expect to read on a blog that is supposed to support parents who have children with special needs. None of us is perfect, even you Ellen. Let us not judge each other but love and encourage each other.

Great post Ellen! And I believe I have taken it in the tone you intended - pointing out a few areas of her essay that weren't as supportive of her child as they could have been while keeping a light tone. Thanks!

I'm a regular, long-time reader (and not AT ALL a Sarah Palin fan), but I thought this blog post was very catty and mean. Stomping on another mom of a special needs child because she doesn't speak/think the way you do? NOT COOL.

How would you feel if someone took one of your blog posts, dissected and "corrected" it, and then insulted your looks on top of it? Wow. Just...wow.

I have been a long time reader of your blog and generally love what you have to say. In this case, I think you are way off base.

It is so easy to look at another Mom and pick her apart because you would do things differently, don't agree with her decisions or just think she isn't acting "right". It takes a lot of compassion and empathy to look at another Mom and accept that she is doing the best she can in the moment.

We all face our child's diagnosis and disability in our own way and on our own timeline. Just because she's doing things differently then you would like doesn't make her wrong. Personally I give her credit for having the courage to stand up to all the criticism she faces no matter what she says.

It's true, my compassion got blindsided. I realize full well that the journey to acceptance is long, and that we are all at different points in that journey. But I strongly believe that it is deleterious to Trig (and other kids with special needs) to be presented as not "normal" and it is that attitude that gets to me. Never, even in my darkest moments of despair when Max was younger, would I have described Max to anyone that way. I don't doubt Palin loves Trig, but I do think that—again, as a major public figure—she has an obligation to consider how she presents him to the world. I hold her accountable for that, even if she is a fellow mom of a kid with special needs. Palin has an opportunity to do real good for our kids, and I didn't see that in this essay or otherwise. Referencing kids with special needs as not being "normal" only widens the already considerable gap that exists between our kids and others.

Ellen, I would disagree with your critics here and say that you were too kind! I think you're perfectly correct in taking to task a person with such a high profile as Sarah Palin. How wonderful it might have been to have a truly unique and intellectual article (befitting someone who could actually have been the vice-president of this country)that might have expanded people's perceptions of parenting children with disabilities. I think that's partly a reflection of substandard journalism and the inability for most mainstream media to go beyond the superficial and partly due to the fact that Palin is not the brightest bulb on the earth and doesn't appear to be someone that thinks outside of very narrow boxes.

I followed your link and read Palin's full article, and I actually thought that, overall, it was quite positive and loving. (And more eloquent than I would expect, considering the source...)

Nonetheless, you do make some thoughtful points in your post. I have one to add: Trig is nearly four, yet she references his "baby food." He's not a baby, and his pureed food need not be referred to as such. My daughter is nearly five, and it bugs me that children her age think she is younger than they. We probably all have "hot button" types of words or phrases that annoy us.

The morning after - I'm going to eat a little crow here: I might've been too hard on her. If this had been a random blog post by Susie (I don't know any Susies. If you are a Susie, my apologies) I would have skimmed it and moved on. I still find her pride in others' smiles wierd, the whole thing rather awkward, & I wouldn't have added her to my reader, but that'd be the end of it.

Any writing about kids, esp kids with SN, can be a keg o'dynomite. Too positive & you're not being honest. Too gritty & you're blind to the joy & may even not love your kid. Most blogs I read take years & hundreds of posts to navigate through the highs & lows to (hopefully) present a clear picture. Only to discover the kids have moved on to some new developmental phase & you have to start over. She tried to summarize a whole life in one very short essay.

But... BUT she & Santorum are public figures. They are defacto members of the SN "community" (if there is one) and then they take public policy positions on... I dunno... HEALTHCARE. I'll admit to a visceral reaction to anything she has to say and I don't want her "representing" what it's like to have a kid w/anything extra.

I've been reading your blog for quite sometime, and I am very disappointed in your post about Sarah Palin. I am not a Palin fan, but your post is catty and mean spirited.

One of the things that I have loved about your blog is that you point out how much special needs parents have in common. Who better understands what a special needs parent goes through more than another special needs parent?

The only things we know about Sarah Palin's life are the things we hear through the media. Some things may be true, and some may not be an honest account ofher life. No one is perfect, and everyone learns to accept their child's diagnosis at different times, and people end up on different levels. To publicly pick on someone who isn't where you think they should be, doesn't make sense. No one is perfect, everyone has room for improvement.

The world looks at our kids differently because they are different. I am my son's number one advocate. I push for inclusion. Do I want people to see, and respect, what he can do? Absolutely! But, you know what? I want them to see the things that are difficult for him too. As much as I want the Elementary School to include my son in the "General Population", I want them to know that exceptions that need to be made too. For example, when they get the entire school together, in one place, for a rally, I want them to know that accommodations may need to be made for my son. If he gets up, and wants to take a break, I do not want someone to tell him to sit down and watch the rally. When the school goes on a field trip, I want my son to have an aide, all to himself. In the special needs world, we call it "making accommodations", because it's not routine, or "normal". Normal for us, yes. Normal for the rest of the world, no.

The article that you picked apart was not written with other special needs parents as the target audience. It was written for the masses. Sarah Palin didn't volunteer to be a special needs parent. I have friends that are heavily involved in the DS community, that have been very upset that she hasn't written more about life with a DS child. She writes something, and people tear it apart. She can't please everyone.

We all do things differently. You have written about things that you do with/for Max, that I would never do for my son. Does that make them wrong? We could probably all look at each other and see things that we would love to incorporate into our "strategy", and things that we believe are glaring errors. It's that way with anything in life, special needs parenting just magnifies things.

If you're going to take on the responsibility of holding someone accountable a tough love approach is always the best way to go. Helps the one you are holding accountable not feel attacked and like you genuinely care about that person and what you are holding them accountable for. Yes, I agree in that this may have been more 99% tough and 1% love instead of an equal balance of tough and love. However, honesty is the best policy and that's what you were here...honest about how you feel about this particular essay which you are also entitled to just as Palin is entitled to her feelings as unfortunate as they may seem to you. If nothing else at least this post can help each of us evaluate our stance on the golden rule when it comes to how critical we are of other parents of children living with special needs: "Do unto others as you would have them do unto you."

Ellen, you know I love you, but I'm going to have to disagree with you on a few points. I didn't comment initially because you made me think - I began to wonder if maybe I shouldn't have viewed the piece favorably when I first read it a few days ago. Eventually, though, I decided to speak up, because I'd also like to remind you of some things you may have not thought of when reading the Palin piece.

As to #1 - It appears to me, since she put the word normal in quotations, that she wasn't saying Trig isn't normal or that other people are - I might phrase it the same way if I were writing to a general audience. We who live in Special Needs Land use language like typical/non-typical, but I don't know that the audience she was writing for would grasp the nuance. The quotes, in my opinion, hinted at normal being...well, a ridiculous construction.

As to #2 - I don't quite get why what she said was so terrible. She appeared to me to be saying that it isn't important what he achieves in terms of mainstream success, because he's fine just the way he is. And I think it's significant that she said he "may" not be the next Gretzsky - which allows for the possibility that he may.

As to #3 - I agree that what she said was ridiculous. My gut tells me she didn't mean it exactly like that, but was instead speaking about how it affects her personally, but it's out there and I'm not going to defend it.

But putting aside 1-3, I do want to move on to #4 and #5. You know that I have two kids with special needs - a daughter with CP and a son with Down syndrome. I can tell you from my own experience that the parent mindset is very different between the two diagnoses. A lot of people don't know what CP is, and few who don't navigate the CP world can recognize and identify it when they see it. Down syndrome is different - most people can identify a kid with DS, even if they don't know much about it.

And here's the kicker...the thing about kids with DS is that you get two distinct reactions - the people who look at your kid and wonder why you didn't abort, and the people who have positive associations with kids who have DS and show it. Sometimes strangers smile at Nathan in a way that tells me they think he is A-W-E-S-O-M-E with a capital A BECAUSE of his DS, not in spite of it. They are drawn to him like a fly to honey, and I know they aren't feeling pity. We never experienced that with Sarah Kate - lots of people smile at her, but the ones who smile enthusiastically are usually the people who know her and appreciate her spirit. Others are just uncomfortable with disabilities, and it shows (until they get to know her :) ) - I imagine that's the experience you've had with Max, as well. Just know that there is a segment of the population that are enthusiastic special needs smilers!

While I don't think Palin's piece was perfect (and I don't want her to be our president), I don't think what she wrote was worthy of disdain.

hmmm, this post takes a lot of digesting. While I skimmed thru the post from Palin first (as a full time mommy to 4, 2 having special needs) I don't have time to pull it apart. More power to you if that what you want to do..you know publicaly bash another special needs mom? However I do want to menion my kids are not "normal". None of my kids are. Even the 2 non-special needs kids. They are not normal either. They have a compassion for the hurt, the confused, and the "special". They know what a trach is and could probably suction it with ease, they are used to specticles made in large crowds, and sometimes join in. My 2 special needs kids are not normal either. One loves to sit and stare at a blade of grass for hours on end, 1 prefers to literally tear down dry-wall. Now that I know Max is "normal", I have something to compare my children too. All four of them, not normal. Maybe in my spare time I shall take one of your first posts made when you joined the special needs world and see if I have anything to pick apart.

I've got news for Sarah and lots of parents of "normal" kids--most of those normal kids won't be the next Wayne Gretzky either, but that doesn't mean all those parents are unhappy about that.

Being a public figure, Sarah Palin must be accountable for what she says. In the article she was putting herself out there as a spokesperson, representing special needs parents. It is not mean spirited to challenge her statements. How else will she grow if her statements are not challenged?

I am not only my daughter's advocate, I am her cheerleader, critic, and defender. I was shopping for souvenirs in Ketchikan while on a cruise in 2005 when I heard a woman shriek behind me: "God bless you, you poor child." I turned around to find a woman trying to hug my daughter in her wheelchair. I gently removed the woman's hands from Amber and told her: "God already does, thank you."

I was upset about that interaction for most of the afternoon. How dare this woman suggest to people, but especially to my daughter, that God has not blessed her because of her disabilities.

Jim always tries to give me a better perspective. Recently someone commented that I had to be miserable from "pushing that girl around all these years." I was furious but Jim just pondered aloud whether he had been more miserable pushing her around Disneyland, Sea World, Oahu, Maui, the San Diego Zoo, Costa Rica, Acapulco.... You get the idea.

Andi, I respect what you said, and adore you right back. There are many ways to read into a piece, and everyone is entitled to their opinion. Opinion: That's what this post is, and that's what this blog is. The one thing I have been feeling deeply bad about is people believing I was slamming Palin for her lack of acceptance of Trig. I wasn't, at all—that's the opposite of what I do on this blog. In the last few years, I've read several articles where she's talked about feeling blessed (as she does here). I do think she has acceptance. And I also think she reinforced some negative stereotypes about kids with special needs. All I want is for our kids to be accepted by the world as human beings who are measured by the same worth as any people are. If I've gone overboard, it's because I care so deeply about that.

Agreed, Ellen! I can appreciate that you felt Palin reinforced some negative stereotypes - I guess I'm more inclined to just be grateful that something positive was written about parenting a child with special needs, as opposed to much of the faux-positive press that people with disabilities so often receive ("Cerebral Palsy Sufferer Achieves X" and "Down Syndrome Victim Inspires Others" - the words "sufferer" and "victim" in the headlines of feel-good stories is one of my pet peeves!) I should probably have also stated that Mr. Andi and I were comp'd two tickets to hear her speak at a non-political fundraiser for the local exceptional foundation last year. I expected her to be "all politics" but she surprised me. I've heard all of the criticism that she uses Trig as a prop and isn't involved with him at all, but many of things she said that night told me that she feels what I feel as a special needs mom - there are some things you just can't fake, if you know what I mean. :)

And for the record - I don't think your post was inappropriate or a personal attack - there have certainly been much worse things written about Sarah Palin than this piece! :) She is a public figure by her own choosing, so by definition she is "fair game" for critique when she speaks. I recently received my own share of "you're a horrible person because you wrote that" about another public figure, even though my post wasn't meant to be entirely negative or positive (I was also blasted for defending the person I was accused of tearing down...go figure!)

The great thing about this post - even though I disagree with much of it - is that you encouraged people to think about how disability is portrayed in our culture, even by some parents of those with disabilities. I also think we as parents need to realize that for all of our desire to achieve inclusion for our kids and do our best to help them reach their maximum potential, we can become the biggest obstacle to those two goals if we aren't careful.

I'm an autistic band zealot. My band director never pities me like Sarah Palin pities her son Trig. I am passionate about practicing, possibly to the point of eccentricity. I also know a girl with Down's Syndrome. Everyone loves her expressive nature. I know I do.